Quarterly CF Check Up

Ugh! I dread this appointment; the week before this appointment I am just a ball of nerves as I know what this appointment means. It means tears, pain, needles, and ick. We get the call from Billie that we need to confirm the appointment and it’s a knot in my throat, but there was a twist in the call. Billie (bless her heart – she has found her true calling in life) had asked if we could get to the hospital earlier to complete the xrays, and I had asked if we could just have them done at Dr Henry’s office since they have a tech there and it’s 3 blocks from our house. She was excited, yup schedule it! We confirmed the time and hung up. Then starts the phone calls. 1) Call Dr Henry’s office to see what the schedule looks like for the week either right away in the morning or latest appointment of the day. 2) Call Nick to see if his schedule will allow him to go the appointment 3) Call Billie back to confirm the xrays are scheduled.

Wednesday afternoon is the scheduled X Rays – in my head, this should be a breeze, two images at Dr Henry’s office (where it’s not the hospital), should be an in and out. Well, I was WAY off. I call after I’m done with work and Nick is frazzled -worst appointment he’s ever had with Maddox. The only plus side was that the tech was able to get amazing images of his lungs as he was full out screaming.

Thursday morning, Maddox was so worn about from the appointment on Wednesday that he was groggy the whole drive to school that we weren’t able to have our pep talk on the throat swab (already behind the 8 ball). The drive up, Maddox didn’t want to go and just wanted to go home. I had his bag packed with a ton of stuff to play with and dad had a few things up his sleeve. We get to the check in desk and it’s the same friendly smile on the other side of the desk. We only see her every 3 months and Maddox always makes her smile. We found the right elevator the first time and walked right up to the CF Floor. We stopped at the team’s office to say hi and find our room – so far, so good.

Billie walks in and we go through the quarterly questions, how’s he feeling, concerns, good, bad and ugly. She then states we need to do height and weight and he walks right up to do both without any issues. Ok – things are going good! We have to do the throat swab, he mustered enough for her to swab but it wasn’t enough, which means we have to do it again. Maddox is just screaming and mad. It came to the point I am holding him as he is screaming so she can get it done. Ugh (it’s gotta be done). Then we hand Billie our CF painted board. She loves it and takes it back to their office.

Then comes everyone else into our room. Let me set the stage of where my brain is at; I hate hospitals, Maddox is already crabby and screamed, I know that they had to draw his blood yet, I know that we are behind on weight gain, I am nervous on the swab results as he’s been sick, I feel bad that the xrays didn’t go like I had envisioned, and then walks in about 6 or 7 people in his room almost all at once. Maddox is playing football one of the techs, giggling and hiding behind the recliner, Nick is having a conversation with one other techs and everyone else is asking me questions. WHAT IS HAPPENING? Our social worker then drops the ball – Maddox do you want to go pick out some toys? The giggling stops, the room is suddenly quiet and he walks away with her. He comes back with an arm full of stuff. I’ll give you a guess of what he brought back; football, another small ball and cars #boymom.

The techs ask the rest of their questions and review their findings; we are still behind on the weight curve. One pound and he would be in the 50 percentile. Hell, I look at an ice cream cone and gain 5 lbs, I wish I could share that with him, but it’s just a struggle which has always been. The techs leave to go share with Dr Pete their results and then walks in Dr Pete. He does the normal checks; heart, lungs, ears, eyes, nose, throat, etc. After he plays catch with Maddox and a few other chit chats, he states that the tonsils and adenoids should come out. What? I know that it’s the best for him, but surgery? Esh – I was not mentally ready for that bombshell. We discuss what the recovery would look like, timing, etc and he stated the sooner the better. Dr Pete says the good byes and in walks Billie. She stated that she would take over and help us find an ENT that has dealt with other CF patients as it’s a special process. (Thank you Billie). We snap the team picture and there is a new person in the hall way – part of Child Life.

Child Life is a new program that the CF Team is utilizing to help kids go through procedures less stressful. Billie mentioned it in our phone call, I agreed we would give it a shot as it can’t hurt anything.

She was amazing. She had a bag of toys and a small kit. In the kit she explained what the phlebotomist would do and what Maddox’s job was during the process. We even practiced on Mommy. (Probably not the best person to practice on as I almost passed out during the test.)

They played with her games but the phlebotomist never came. Her build up for Maddox was lost by the time the tech arrived. I am going to fast forward through his blood draw because it sucked; missed the vein the first time and she couldn’t get anything out of him the second time as we are all restraining him while he’s screaming. You get the picture.

I walked out of St Vincent’s just emotionally drained. My brain was racing through so many different conversations/things to think about; phone calls on surgery consultations and prep, reliving the blood draw, trying to remember what everyone told us and what I needed to remember. I had tears in my eyes as we drove to Culver’s and you can believe that I had my ice cream. I look across the table at my little man who has a big smile on his face after everything he just went through. With his draining nose, goopy eyes and popping ears, I know that this is what he needs but still.

At this appointment; his lungs sounded awesome, the PT had no concerns on his growth and development, the blood work did come back low in Vitamin D so I told Nick we are all going somewhere warm and plenty of sunshine sometime this winter for vacation. The consultations are set for the new year and then to get the surgery scheduled. #myhero.

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